News and commentary on the autism epidemic and my beautiful boy who is living with autism.

February 2, 2011

CDC Wants to Know What You Think About Autism Research

CDC has commissioned a survey for stakeholders in the autism community so that they can get a sense of what you think about autism research. I filled out the form and I am sharing my answers with my readers.

(Does anyone find it interesting that the CDC web site has had to add the claim that their health information is "Credible"? Someone is getting sensitive about their information being challenged.)

Evaluating Change Workshop Survey

1. Please indicate your sex:

Male Female

2. Please select your age range:

21 or younger

22-30

31-40

41-50

51 and older

3. Please select your ethnicity:

Hispanic or Latino

Not Hispanic or Latino

4. Please specify your race (check all that apply):

American Indian or Alaska Native

Asian

Black/African American

Native Hawaiian or other Pacific Islander

White/Caucasian

5. Select your region of residence:

Select your region of residence:

Midwest

Northeast

Southeast

Southwest

West

6. What is your area of expertise? (check all that apply)

Epidemiology (The branch of medicine that deals with the study of the causes, distribution, and control of diseases in populations).

Other research field, specify

Clinical

Stakeholder (parent, person with an ASD)

Other (please specify)

7. What is your affiliation? (check all that apply)

Federal government

Academia

State or local government

Advocacy

Parent/family member

Other (please specify)

8. What role does the field of epidemiology have in explaining ASD prevalence increases?

Primary role - it is the major field of science which can address the reasons for ASD prevalence change

Major role - it can provide population-level indicators of risk which need to be further examined by other types of studies

Moderate role - it can provide complimentary information to basic science

Minor role - it can provide a complimentary role to basic science, but cannot provide a great deal of information on the causes of ASDs

Limited or no role - without better understanding the causes of ASDs, it is unlikely epidemiology will provide much explanation

Other (please specify)

9. Do you think the term "epidemic" applies when discussing the occurrence of ASDs?

Yes. Why?

No. Why not and what is the best descriptor?

Comment field

Going from 1 in 10,000 to 1 in 100 in less than thirty years? How is this not a nobrainer?

Rapid increase - yes.
Unexpected increase - yes.

The only way one can get away with NOT calling it an epidemic, is to define epidemic in light of ONLY communicable viral illness, and since there is suspicious that HHV6 and XMRV are involved, you can't rule that out either.

The fact that CDC has not declared an epidemic is an indictment of the CDC.

10. What specific factors do you believe are contributing to the trends in prevalence of autism spectrum disorders over time?

A rapid increase in chemical exposures including, but not limited to: pesticides, environmental pollution, food contamination including the introduction of GMO's, pharmacuticals giving during pregnancy and MOST IMPORTANTLY, the CDC's over aggressive, inadequately researched, indescriminant, irresponsible, corrupt and unconstitutional vaccine program driven by the CDC. This public-private partnership has no true accountability mechanism to prevent it from becoming bolated and from doing widespread neurological and autoimmune damage to our children. It is a runaway train.

11. What specific factors do you believe are contributing to the trends in prevalence of other neurodevelopmental disorders over time?

Corruption.

Those in government, pharma and the chemical industry have abused their power and have poisoned the american people in the name of "health and progress" for their own financial and power gains.

12. Please list 5 things that can be done in the immediate future (next 4 years) to assess the factors you listed in Question 10.

1. Federal law protecting the right of informed consent in vaccination. Every american in every state needs the right to say no to any or all vaccines with out coercion of any kind.
2. Legislation to end the revolving door between public health policy makers and industry insiders. This involves the doing away with "ethics wavers" that allow those with conflicts of interest to participate in policy decisions.
3. The abolition of the National Childhood Vaccine Injury Act. Citizen stake holders should be given the mechanism to force those in control of public health policy and vaccine production to testify under oath. This mechanism exists in the civil court system and the constitutional rights of every American to have access to the courts have been removed in vaccine damage via this unjust law. Public health officials and pharma can now lie to their hearts content and cannot be held accountable by the public. Congress will not hold them accountable.
4. Lengthy investigations by the US Attny General into CDC, FDA and HHS behavior in the autism epidemic.
5. Ethics laws, and laws governing the behavior of those in government and pharma need to be enforced and those found guilty of allowing the poisoning of the american people, specifically children, need to go to jail.

13. If the factors you listed in Question 10 cannot be assessed immediately, what 3 steps can be taken to do so in the future?

The best predictor of future behavior is past behavior.

So I assume that CDC will continue to do what they have been doing... pretending that they care what parents think and that they are doing something about autism, while ignoring parents and doing nothing about autism.

Therefore I expect that they will make a big public fuss about the fact that they put this survey out to hear from parents, while they shove all the complaints from parents about their unconscionable behavior in a drawer.

Since I am sure that the factors in question 10 will never be addressed by your agency, I suggest the three immediate steps:

1. CDC come clean about their autism stance and issue a public statement admitting that they do not care about children with autism and they will not be addressing the problem either from the causation side, nor the treatment side. That way people can stop trusting that you are going to handle the problem and ban together to find their own solutions.
2. Immediately turn over any funding specifically designated for autism research and treatment to the organizations who have actually been thinktanking, researching and finding treatments for autism. I suggest Autism One, The Autism Research Institute and the National Autism Association. I am excluding Autism Speaks, as they waste most of their money on Park Avenue office space, high salaries and parties, and have not come up with ANY treatments after millions in donations over several years. (Remember the best predictor of future behavior is past behavior. Those who are not getting results should NOT be funded. That includes CDC)
3. Admit that you stopped releasing birth cohort prevalance rates for ASD with the 1998 birth cohort because you don't want people to know what happened when thimerosal was revealed to be in the vaccine program at sky high levels and began to be removed. That way states can do their own assessments and make their own determinations on whether or not CDC is giving them good vaccine program advice and whether or not they will adopt the recommendations of the ACIP. States and families are paying for all the damage. You guys just put your policies out there and if it kills every last child in the country, you still get to home at sip wine by the fire every night. There are NO consiquences to CDC if they are completely wrong. So admit it and let everyone else worry about protecting their children. They deserve the right to know that you are not doing it for them.

Can I add a number 4?

4. Stop trying to destroy our doctors and attack parents in the media.

In short... JUST DO NOTHING, IGNORE THE PROBLEM AND LET PEOPLE KNOW YOU ARE IGNORING THE PROBLEM.

14. Please indicate your agreement with the following statement, "In the immediate future (the next 2-3 years) data are available to assess the factors that are contributing to the trends in the prevalence of autism spectrum disorders."

Strongly disagree

Disagree

Neither agree or disagree

Agree

Strongly agree

Please provide additional comments:

The data is available now. You just are not running it. (Well you likely ARE running it, but because the results are an indictment of your own policies, it is more likely that it is not getting published.) CDC is actively burring it. Apparently you think that we are such morons that we can watch CDC issue WEEKLY reports of confirmed cases of H1N1 during the 2009-2010 flu season, but that you just can't tell us how many children born in 2002 have autism? My son is 8, and you can't tell me the autism rate for his birth cohort? And you expect the autism community to believe you are acting in good faith on vaccines and autism! Give me a break.

I read this question and think... "Well lookie here... they are telegraphing their next move. They are going to announce that we should have this in the next two or three years the data they likely have had for the last ten years. That buys them another three year of stalling while they come up with their next move and if not, well that is just the next presidential administrations problem, isn't it?"

15. Please indicate your agreement with the following statement, "The surveillance field can collect and analyze the data required to assess the factors that are contributing to the trends in the prevalence of autism spectrum disorders within the next decade."

Oh! Maybe 2-3 years was not a long enough stall... Now we are talking 10 years! So by that math, the people who made the poisonous policy decisions beginning in the late 1980s will be gone or or close to retirement! Who ever commissioned this stupid stall survey will be summering in the south of France! My son poisoned in 2002 will be 18... too late for treatment and all of the $$$ we spent on his treatment our of our own pocket will be out of our own pocket, and will be too late for interventions that the government could have paid for that would have lead to him living an independent life.

This question is just plain evil and shows you don't give a crap about our kids. Even if this WAS an earnest question, is shows you doing give a damn about our kids. Or ANY kids. "Do vaccines cause autism? Wait right here... I will be back in TEN YEARS to tell you."

Nothing but CYA.

This survey becomes a bigger and bigger joke as I move through it.

16. What do you think is the most likely ratio of identification:risk as an explanation for increases in ASD prevalence?

100% identification : 0% risk

75% identification : 25% risk

50% identification : 50% risk

25% identification : 75% risk

0% identification : 100% risk

Other (please specify)

Does the mob ever send out surveys to the families of their murder victims asking what they think can be done about the high murder rate? Or how many unexplained/unsolved murders or broken kneecaps that they will be willing to tolerate? I wonder.

17. Why do you think prevalence estimates on how common ASDs occur in the population are important?

Because they could point to potential causes, like change points in the toxic loads of infants and toddlers, like increases in the vaccine program and increases in mercury exposures and decreases in mercury exposures. Which is why, I assume, you don't actually do them any more.

18. Why do you think it is important to understand what is contributing to the trends of autism spectrum disorders?

Why? Our community has been screeming at you for ten years and you don't care.

Remember the National Autism Associations 09.09.09 campaign? You were bombarded for an entire day asking how long we were going to have to put up with this garbage and CDC coudn't even pick up a phone or send out a BS press release saying some bland, non-committal, vanilla statement from some low level PR guy saying, "we understand the frustration of these desperate parents and hope to have answers for them in the future".

You disabled my son. The only reason you want information from me is to figure out how to keep getting away with all the damage you are doing.

I hope you will make the most of the invitation that CDC has offered you to give them feedback.

11 comments:

Okay, so although that survey was frustrating for you to fill out I have to applaud you for your answers and thank-you for filling it out. I plan to do mine this evening. Thats was awesome! 2 thumbs up, A+!! What else can I say?? Go Ginger!!!

Ginger, the only problem with your responses to this 'survey' is that they assume that the people at the CDC will be intelligent enough to actually understand what you've said. From all available indications, they are barely literate at best!

There is only one thing here that makes me think that the CDC may be slightly ahead of Australia on this subject. They call parents stakeholders. In Australia, stakeholders are pharmaceutical representatives, mainstream medical practitioners and government health officials. Parents or consumers don't get a mention.

I don't know what they will think when they read your response - or if they are even capable of rational thought - but if they can think, they should be thoroughly ashamed of their past neglect of children and families with ASD and hopefully, you've lit a fire under their lazy butts!

This is the same federal agency that says “The most recent and rigorous scientific research does not support the argument that thimerosal-containing vaccines are harmful.” http://www.cdc.gov/flu/protect/vaccine/thimerosal.htm